Valuing People – What Now? Ten years on from its publication, the Government’s Valuing People policy (re-born as Valuing People Now in 2008), has achieved something quite unique in terms of Government policy – it still has deep and broad support from the vast majority people directly affected by it, i.e. people with learning disabilities and families. How many other ten year old policies can claim that? The usual route is one or both of being discredited and/or quietly consigned to the dustbin. The fact that Valuing People is still viewed by most people, families and professionals as the template for where lives and services should be heading suggests it got something right. Given this, the Coalition Government’s commitment to continue with the policy is to be welcomed – but the question is what this will mean in practice? When Paul Burstow spoke at Learning Disability Today in December, his encouraging statements about the policy were followed by a lack of any detail when responding to questions about how the policy would be delivered – including whether funds would exist to resource a continuation of national and regional support programmes. A government policy without any meaningful way of promoting and ensuring its delivery is more of a fig leaf than a policy. From its outset, Valuing People was faced with two major challenges. Firstly, it had limited Government priority. For the first five years it was difficult to get the ‘enforcers’ of Government policy to pay attention to what the policy said. In regulatory terms the Social Services Inspectorate (subsequently CSCI) for some time continued to monitor things relating to a previous policy mind-set whilst the NHS regulators completely ignored Valuing People. Wider statutory functions such as Job Centre Plus, the Learning and Skills Council and the Department for Work and Pensions did nothing specific on their commitments within the policy – seeing it as a DH initiative. People with learning disabilities simply were not a priority. This connects with the second challenge faced by the policy – it was seeking to reverse centuries of societal prejudice against people with learning disabilities. Public perceptions of (at worst) people having no value to society or (at best) of people needing to be cared for as passive recipients of services, were never going to be changed overnight by the publication of an enlightened government policy. This journey would take decades – with government and public sector leadership needing to be at the heart of that process. Despite this, by around 2007 there were real reasons for optimism. For example: • People with learning disabilities were being listened to. There had been a huge growth in self-advocacy – both in terms of spending by local authorities and the way in which ‘nothing about us without us’ was becoming the norm. People with learning disabilities were genuinely present in much decision-making that affected them. • There was a supportive legal framework. The Disability Discrimination Act and Public Sector Duty meant that all public services had to pay more regard to people with learning disabilities or face legal challenge. • Different parts of government were starting to be more supportive. Helped by other parts of government such as the Office for Disability Issues and Social Exclusion Unit, issues such as jobs and housing were getting greater attention – for example through the creation of the PSA indicators on paid work and housing. • The wider health and social care policy framework was becoming more supportive. Most obviously, the Valuing People supported ‘In Control’ initiative had been a major influence on the ‘personalisation’ agenda. CSCI and the Healthcare Commission (the latter pressurised by the Cornwall and Merton and Sutton scandals) were leading innovative work from a regulatory perspective. • There were numerous examples of positive initiatives and progress from across the country. Almost wherever you looked across England, it was possible to see how local people had taken the Valuing People principles and led innovative change. Whether that was accessible public toilets, time-banking or access to primary care, the world and people’s services were gradually changing. The reasons for this progress were really quite clear and arose from three interconnected things. 1. Self-advocates and families were using the Valuing People policy as a lever to press for change. People believed in the policy and saw it as a way to underpin their demands for services to do things differently. Managers and professionals were beginning to be held to account for things that they did. A notable national example was the Home Office’s conversion to taking action on hate crime and this becoming part of the Valuing People Now policy. This was a direct result of the National Forum of people with learning disabilities organising a campaign, going to see the Home Office Minister and persuading him of the need for action. 2. Individual professionals and managers (from front line staff through to Directors of Social Services) who for years had been pursuing an agenda similar to Valuing People, now had both a formal policy to endorse their beliefs and actions and access to networks and resources (see below) to increase their effectiveness. The huge contribution of such people should not be under-stated. 3. The Valuing People Support Team was ferreting away developing advice and guidance on how to make change happen, networking people to prevent the proverbial ‘reinventing of the wheel’ and nagging away, both regionally and nationally, at those parts of the system who continued to try to avoid including people with learning disabilities. Seeing themselves as substantially accountable to people with learning disabilities and families, the Team sought to hold to account those who did not want to deliver the letter and the spirit of the policy. This support and progress led to Valuing People Now being published in 2008 -which gave further cause for hope. There were new targets and priorities. Different parts of government were more formally tied in. The Valuing People Team both continued and expanded – increasing from one person to two or three people in many regions, a new Valuing Employment Now Team being created and the National Director’s Office increasing from three staff to fourteen. An important aspect of this was that of a growing belief from some senior people within the DH, that Valuing People had not delivered as it should. Questions were asked about why, six years on, not everyone had a person centred plan, or a health action plan, or a direct payment, or a job. Putting to one side the question of whether a policy that was trying to change societal attitudes could be judged just six years on by limited performance indicators that were asking a different set of questions, Valuing People Now contained an increasing emphasis on delivering and evidencing change. To support this, one of the most impressive developments in the last few years has been the large amount of guidance material produced by the Valuing People Now programme. Managers and professionals now have access to swathes of good practice guidance on issues including employment, housing, support planning, transition to adulthood, working with people who challenge and health (to name but some areas). There really is little excuse nowadays for people to say they don’t have access to things telling them how to deliver the policy. The challenge is simply (sic) that of making the change happen – which takes us back to the two challenges described at the start of this paper, namely (i) the levers government can pull and (ii) people wanting to do things differently. The Coalition Government’s plans for Valuing People Now are (at the time of writing) unclear. The policy will continue, other policies such as ‘Big Society’ have the potential to be in tune with the Valuing People vision, and (in some places) a learning disability focus will remain – for example in the NHS Operating Framework as a continuing response to past identified NHS failures and the DH investment in the Improving Health and Lives Observatory and Confidential Inquiry. However, we already know of a number of definite or likely actions that may undermining progress. For example the scrapping of the PSA indicators risk reducing the attention paid to people getting paid work and their own home, changes to housing benefit and mortgage support payments will impact on people finding good quality housing and the reduction in the scope of CQC’s role means they appear to be stopping significant activities that, in the past, have helped to expose poor practice. The other policy challenge is that the Coalition Government strongly believes in reducing the role of national government in policy interpretation and delivery. As Paul Burstow said at Learning Disability Today – “people need to look to the Town Hall, not Whitehall’. Yet there is still a need for change and direction that does start with central government. For example, Jim Mansell’s DH commissioned paper on people with complex needs identified 33 actions that were needed so that some of the most vulnerable people were enabled to have better lives - most of which require some central government action. As for locally led initiatives, the experience of the last ten years tells us two things. Firstly that structured learning and ‘cross-fertilisation’ is required if ideas are to be shared beyond individual authority boundaries and resources not be wasted in reinventing the wheel. (Whatever happened to concern about the ‘postcode lottery’)? Secondly, for every inspiring local action there is a local horror story, where the ‘town hall’ lack of priority given to learning disabilities resulted in ill-informed service decisions or even just a complete lack of action to deliver the policy – some of which the Valuing People programme were able to challenge and reverse. It is significantly for this purpose (supporting and advising local people and cross-authority learning) that some form of continuing Valuing People delivery support is essential. Local leadership is rightly the desired end-position, but the evidence suggests we are still some way from it existing across the country in a knowledgeable and sustainable manner – particularly in these difficult financial times when it will need to be able to demonstrate what we at the NDTi call ‘austerity with integrity’. The cuts in public sector spending will clearly have an impact. It would be difficult to argue that people with learning disabilities should be totally protected from the impending cuts, and indeed there might be potential for using cuts as an opportunity to do things in different, better ways. For example, using natural community supports rather than always relying upon paid staff, or exploring assistive technology to replace unnecessary overnight staff cover in care homes/supported housing. However, these initiatives should be happening anyway and cannot negate the effect of other direct service reductions that are taking place. An equal cause for concern to the continuation of a focus on better lives for people with learning disabilities arises from the likely impact of the current situation on the three factors identified above as underpinning progress up until now: 1. Self-advocates and families. Across the country advocacy and family groups are reporting that (i) their funding is under threat and (ii) they are increasingly not involved in important decision making. Reports are increasing of what can only be described as people being present in meetings but not being enabled to genuinely participate. If funding for advocacy and families does reduce significantly, the concept of people holding services to account will be fatally flawed. (It is interesting to note that the Secretary of State for Health has taken the ‘nothing about us without us’ phrase to be one of his main general NHS policies – whilst not appearing to know where it originally came from!) 2. Managers and professionals across the country are reporting increasing demoralisation. In part this is connected with apprehension about financial cuts and their jobs being at risk, but it is also linked to what they perceive they are being asked to do. As one group of managers recently reported on an NDTi leadership programme: “We used to think we were concerned with improving people’s lives. Now we feel we are concerned with ticking boxes and evidencing progress to defend the organisation – whether progress has happened or not”. In addition, restructuring arising from cuts to management positions is resulting in knowledgeable people either leaving or taking on wider responsibilities, with the consequential reduced capacity to focus on learning disability issues. 3. Whilst a formal decision has yet to be taken on whether the Valuing People Now national and regional teams will continue, the staff involved have all been put ‘at risk’ and most are being actively encouraged by their managers to look for other jobs on the assumption that the programme will cease by April. Whilst the quality of regional support for delivery has varied, the prevailing view from local leaders across the country is that the regional delivery resource has provided ‘added value’ and needs to continue. Underneath this is a belief not openly stated but heard from some in the corridors of power that learning disabilities has had its time as a profiled policy and cannot expect a continuing focus. Such a belief system obviously comes from people who believe that those centuries of discrimination can be overcome by ten years of a comparatively lowly resourced policy. Added to this is a more perfidious argument that learning disability services should be ‘mainstreamed’ – after all (some people are saying) isn’t that what Valuing People argued for? Thus specialist social workers, community teams and dedicated managers are being removed in the name of ’inclusion’ (though probably connected to financial cuts). Such arguments completely miss the point that mainstreaming and inclusion work because and when they are underpinned by specialist support. ‘Reasonable adjustment’ requires an additional focus to ensure that the most marginalised people really do have equal opportunity. Taken together, this means that the Valuing People policy, whose progress was built on a drive for system change, led by self-advocates, families and professionals and supported by a national and regional programme of work, risks being faced with weakened advocacy and family networks, demoralised staff, often with a reduced focus on learning disability and no national and regional infrastructure to promote mutual learning. However, the learning disability sector has been through and got through more difficult times in the past than this. We have a number of strengths to build on, including: • A policy framework that most people still ‘own’ and support • Ten years (and more) experience of building the self-advocate and family movements that cannot be undone overnight • Examples of progress across the country and knowledge about how to make this progress – much of which can be replicated at little or no cost, supported by materials that will continue to exist for use • A continuing commitment to better lives for people from many professionals and managers So, in debating ‘Valuing People – What Now’, this paper concludes that there are five particular things to consider when taking the Valuing People vision into its next phase: 1. Focus on Rights and Life Outcomes. Whilst it is important to measure and monitor service outcomes and progress, we also know how possible it is to corrupt such measurements and that, on their own, they rarely tell the full story. We are still on the long journey back from institutionalised societal discrimination against people with learning disabilities and so our prime focus has to be people’s rights and the quality of the life outcomes they achieve. We must develop strategies that ensure service decisions are based upon asking two key questions: (i) does this respect and promote people’s rights and (ii) will this improve the life outcomes achieved by people? Any other measuring or box ticking has to take second place to these core questions. This is particularly important in relation to personal budgets, where the national (and often local) focus is on counting how many people have got an individual budget – rather than whether people are then enabled to use that in a way that improves their life outcomes and community inclusion. 2. Remember ‘Nothing About Us Without Us’. How can we both protect investment in self- advocacy (and family carer support) and also ensure that the organisations (big and small) involve people and families in decision making in ways that are genuine – including when they are making difficult decisions that arise from reduced levels of public expenditure? Such action needs to be associated with ways of helping to make certain that advocacy and family support is truly representative and, in its own way, providing value for money from public investment. 3. Use the Big Society Concept. Whilst exactly what Big Society is is far from clear, we do know that (i) it is not a new concept and much of what the learning disability sector has worked on for years is closely connected to the idea, but also that (ii) without specific action (reasonable adjustment) people with learning disabilities risk being excluded from whatever Big Society turns out to be. How can we use the concept, get involved in it and exploit it for the benefit of people with learning disabilities? Are we willing to finally take risks and more wholeheartedly try out ways of working that are not based on traditional definitions of a ‘service’? 4. Get vocal and get organised. People with learning disabilities have been marginalised because their voices are ignored by those with power, both nationally and locally. We need to be united, clear and vocal in what needs to happen – communicating defined expectations to decision makers at all levels. Throughout the 1980’s and ‘90’s, the divisions created by the argument over village communities sapped energy from progressive change and reduced the ability to influence policy. Valuing People provided a unifying focus and whatever happens to the policy, it is important that progressive voices are united and heard in the right places. How to do that is a major logistical challenge – particularly if the Valuing People delivery programme (which in many ways has been a focus for that since 2001) either does not exist or is explicitly and only there around delivering defined government targets. 5. Remember our history and use it well. There has been real progress made in the last ten years. Whether that is around the increasing voice of people themselves, a new partnership with many families, greater person centred working and selfdirected support or the final closure of the long stay hospitals – we must trumpet that progress and the knowledge of how that was achieved. The best way to stop an idea is to discredit it, and those who do not want the work of the last ten years (and more) to continue will potentially create a myth of Valuing People having achieved little. If that is allowed to happen, then concepts such as self-advocacy and self-directed support will themselves come into question. An honest, but strong articulation of where and how we have progressed since 2001 should be a part of our daily lives. Some bits of the Valuing People Now policy could and should change – the world moves on – but whilst the core of the policy and the need to keep working on it remain it is important that national and local government continue to invest in specific actions targeted at improving the life chances of people with learning disabilities. As noted earlier, changing centuries of societal discrimination takes us on a long journey – one that is still far from complete. This paper cannot and does not claim to say all that there is to be said about what should happen to the Valuing People policy and it delivery after April 2011. There are hundreds and thousands of people across England who also have their views and ideas – which we hope to read in the debate from January 4th to mid February on the NDTi Facebook discussion page: www.facebook.com/pages/NDTi/129080333809394 Rob Greig Chief Executive National Development Team for Inclusion Montreux House 18A James Street West Bath BA1 2BT Tel: 01225 789135 http://www.ndti.org.uk/ NDTi on Twitter <http://www.twitter.com/ndtirob>
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